Tuesday, 14 July 2015

The language we use reflects our attitudes but perhaps more important, it can shape those attitudes. A new study considers this power in the context of autism. Lorcan Kenny and his colleagues have conducted a UK survey of hundreds of autistic people; parents, relatives and carers of autistic adults and children; and professionals in the field, about their preferences for the language used to discuss autism. The research was conducted online with the help of the National Autistic Society.

The main finding is that there is no consensus about the preferred terms to use when talking about autism and people with the diagnosis. A key disagreement between and within the surveyed groups is whether the language we use should put the "person first", as in "people with autism", or put the diagnosis first, as in "autistic person". Overall, researchers and other professionals expressed a strong preference for the former. One professional said:

"I don’t like phrases which describe a person as their condition, so would always go for 'person' first, because that’s what we all are regardless of what conditions we have. I would never describe myself as a thyroidy, for example."

In contrast, autistic people showed a clear preference for autism-first terminology. One of the autistic adults in the survey said:

"Separating the person from their autism is damaging, as it reinforces opinions about autism being a ‘thing’ that can be removed, something that may be unpleasant and unwanted, and something that is not just another aspect of a whole, complete and perfect individual human being. Describing oneself as autistic is an extremely important and positive assertion about oneself, it means that one feels complete and whole as one is."

Related to this disagreement is the issue of whether autism is viewed as a "disorder" or a "difference", and whether any disability associated with autism is seen as located purely in the individual or as arising from society's failure to adapt to the needs of people with autism. Another adult with autism said:

"Autism is just another way of thinking, not some sort of disease that one can catch."

Yet some parents and carers were wary of downplaying the impact of autism, often because they are the ones championing their children's needs. One of them said:

"I prefer 'disorder' to 'condition' because I think it conveys better the seriousness and the need for support and intervention."

There was also disagreement about the appropriateness and value of the term Asperger's Syndrome (a diagnosis dropped recently by US psychiatry) or "Aspie". Some people felt it was an important part of their identity. Yet others believed continued use of the term undermined efforts to build a united autism community.

Another contentious issue is the idea of autism being a spectrum upon which everyone is located to some degree. This terminology was more popular among professionals and family members than among autistic people, some of whom felt that it trivialises the difficulties faced by those who are "truly autistic".

A notable point of agreement across the different groups who completed the survey was the dislike for the terms "high-functioning autism" (it downplays the everyday difficulties experienced even by autistic people who have good verbal and intellectual skills) and "low-functioning autism" (it undermines people's potential).

The researchers said the "fundamental finding" of their research was that "there are reasonable and rational disagreements between members of the autism community as to which terms should be used to describe autism." They said this "plurality" of views was likely to persist and evolve with time and that for anyone involved in autism, choosing the right language will be difficult and require care, reflection and "practical wisdom". They added: "The overriding principle for those who are unclear about appropriate terminology should therefore be to inquire of the people with whom they are working or describing for clarification."